Adolescents

Physical activity will help:

• improve fitness, balance and co-ordination
• maintain and develop flexibility
• increase muscle strength and improve posture
• help achieve and maintain a healthy weight
• improve mood, help with relaxation and reduce stress
• help with constipation
• provide opportunities for friendships, independence and improved self-esteem.

Adolescents should include muscle strengthening exercises at least two days each week as part of their physical activity routine.

Contact sports such as football, activities that involve extreme extension of the back and neck such as gymnastics, and lifting heavy weights should be avoided.

Adolescents living with spina bifida need to monitor their overall health to prevent complications, minimise hospital admissions, and maintain their independence.

Key things to monitor include:

• mobility
• pressure injuries
• weight gain
• kidney problems: some adolescents living with spina bifida have trouble maintaining their continence, which can lead to serious health issues such as renal failure.  
• shunt problems
• worsening spasms or loss of strength in legs or arms
• skin, particularly your feet and bottom daily.
• regular breast checks, pap smears and gynaecological reviews (for women)
• prostate checks (for men)

Regular clinic visits are important to maintain overall health.

Socialising helps to build self-esteem, confidence and personal relationships. Try to find social activities you enjoy.

Driving will help with your independence and job options. Cars can be changed to suit the needs of young people with spina bifida.

Adolescents will transition to an adult spina bifida service.  Going to an adult spina bifida clinic gives young people a chance to talk about issues with their health.

Attending the spina bifida clinic is an opportunity to have:

• regular medical check-ups
• ongoing advice about continence management
• education about prevention/management of pressure injuries and lymphedema
• review of mobility needs, such as wheelchair prescription, orthoses and footwear
• review of pain management
• discussions about relationships, family planning and fertility
• discussions about social and recreation activities
• referrals and liaison to other services

If adolescents decide not to attend an adult spina bifida service, they can visit their local doctor regularly

Some adolescents with spina bifida may not be ready for information about sex or want to openly discuss relationships/sexuality. It is important to ask questions to get the information when you are ready.

Adolescents with spina bifida may experience additional challenges including:

• how to manage the bladder and bowel during sexual activity
• for men: getting/maintaining erections
• lack of knowledge about sexual activity
• confidence and self-esteem
• lack of independence from parents or caregivers. 

Continence 

Managing the bladder and bowel is important for sexual function and good hygiene. Maintaining good continence for sexual function includes:

• emptying your bladder and bowel before sex
• having an open discussion with your partner about your concerns. This will help you feel prepared in the case of an accident.

Positioning

Sexual positions that suit your individual needs should be explored. Take care with:

• stomas and catheters
• lower limbs
• skin with decreased sensation.

There are aides that may assist with positioning for satisfaction. You can also discuss a stretching program with your physiotherapist to improve flexibility.

Fertility 

Spina bifida does not impact a woman’s ability to fall pregnant. Protection should be used to avoid unplanned pregnancies and sexually transmitted diseases.

Some men with spina bifida can produce children without any medical help. Others may require assistance to father children, depending on their ability to ejaculate. This can be explored in more detail with your doctor and a referral to a fertility clinic as required.